nursing

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Art & science | research

Abstract Aim To explore relatives’ involvement in the care of older adults admitted to residential settings. Method A qualitative approach using semi-structured interviews was adopted. Data were analysed using content thematic analysis. Findings Content thematic analysis revealed that participants experienced a change in role when their relatives were admitted to residential care.

Three major themes emerged: family involvement, family-centred care, and communication. The importance of communicating with staff was emphasised by relatives. Conclusion The transition from home to residential care is a challenging time for residents and families. Nurses need to communicate with families and adopt a collaborative, integrated approach to care.

Keywords Family-centred care, family members, residential care

Correspondence [email protected]

Frances O’Shea is clinical nurse manager, Farranlea Community Nursing Unit, Cork, Ireland

Elizabeth Weathers is PhD student

Geraldine McCarthy is emeritus professor

Both at Catherine McAuley School of Nursing and Midwifery, University College Cork, Ireland

Date of submission November 4 2013

Date of acceptance December 19 2013 Peer review This article has been subject to double-blind review and has been checked using antiplagiarism software

Author guidelines nop.rcnpublishing.com

When loved ones are admitted to residential settings it inevitably changes relatives’ roles. Frances O’Shea and colleagues carried out a study to assess how they perceive this transition

Family care experiences in nursing home facilities

BY 2050, the number of people aged 60 years and over is expected to increase from 605 million to two billion globally (World Health Organization 2012). As the population ages the demand for long-term residential care also increases. In Ireland, around 20,770 adults aged over 65 years live in long-term residential care (Department of Health 2012).

Families are said to play a significant role in the care of a relative admitted to a residential setting (Logue 2003, Port 2004, Gaugler and Kane 2007, Murphy 2007). However, several barriers to family involvement have been reported including difficulty starting a relationship with care staff (Sandberg et al 2002, Bramble et al 2009).

Literature review When a relative is admitted to residential care it can be traumatic for family members and they might experience feelings of guilt, loss of control, sadness and disempowerment (Logue 2003, Swann 2006). Involvement of families in care is said to give them a sense of purpose and help in the transition (Kellett 2007). However, such involvement is complex and multifaceted (Gaugler and Ewen 2005). Dimensions of family involvement outlined by Gaugler and Kane (2007) include:

■ Personal care: assistance with activities of daily living.

■ Instrumental care: assistance with laundry, follow up with doctor’s appointments, financial affairs and bills.

■ Socio-emotional support: talking and engaging in social activities.

■ Monitoring and advocacy: monitoring care provided by staff and advocating to improve formal care.

■ Frequency of visiting. In a study by Port (2004), conducted with a sample of family caregiver-resident pairs (n=93), fewer visits were found to be significantly related to poorer relationships with nursing home staff in terms of getting information and being listened to. Hence, Port (2004) suggests that interventions tailored to improve staff-family relations might also improve the level of family involvement.

It appears that the quality of staff-family relationships is improved if staff believe that families can contribute to care, and if they hold a positive attitude towards family members. For example, Gaugler and Ewen (2005) found that residential care staff (n=41) were neutral about family members’ contributions to care and this

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affected staff-family relationships. Even though staff reported an awareness of the benefits of developing good staff-family relationships, there were obstacles that hindered such relationships. Barriers identified in the literature include resistance to change in the institution, inadequate staffing, ineffective communication, uncertainty of families, and lack of support from staff (Logue 2003, Murphy 2007).

Families usually want to be involved in their relatives’ care (Bauer and Nay 2011), but such involvement is not always supported by staff (Davies and Nolan 2006). Research has found that some staff members adopt an authoritative stance when dealing with family members and speak about managing them (Bauer 2006, 2007). This lack of support can hamper and deter family involvement. Nonetheless, some relatives were said to be demanding and showed little understanding of staff workload or care responsibilities (Gaugler and Ewen 2005, Bauer 2006, 2007). Bauer (2007) suggests that practice could be changed to focus less on the supremacy of staff knowledge and subordinance of the family. The role of families and staff in the care of residents needs to be outlined at the point of admission to residential care.

Views on what the role of family in residential care settings entails varies. For example, some research shows that it is less focused on physical care and more on advocacy, supervision, instrumental and socio-emotional care (Davies and Nolan 2006, Bern-Klug and Forbes-Thompson 2008). Another important aspect of the role of family members is to inform staff of their relative’s history. However, good communication between staff and family members, and encouragement from staff, are essential to enable families to fulfil their roles in residential care (Bramble et al 2009).

The care delivery approach adopted by staff is vital in achieving good communication and staff-family relationships (Wilson and Davies 2009). Resident-centred and relationship-centred approaches to care enabled the development of trusting relationships between staff, residents and families. A co-operative approach to care in which families and staff have defined roles is vital.

Bauer and Nay (2011) maintain that staff-family relationships are strengthened when family members:

■ Feel comfortable with the ambience in a facility. ■ Are consulted and kept up to date about the resident’s wellbeing.

■ Can openly communicate with staff. ■ Have confidence in staff’s abilities.

These attributes are essential to establish a collaborative relationship and to promote family involvement.

In summary, previous research indicates that most families want to be involved in care after their relative is admitted to a residential setting, and family involvement can improve residents’ quality of life (Malench 2004, Gaugler 2005, Gaugler and Ewen 2005, Bramble et al 2009, Wilson and Davies 2009). Yet family members often feel excluded and disempowered when a relative is admitted to residential care (Port 2004, Davies and Nolan 2006, Kellett 2007, Bern-Klug and Forbes-Thompson 2008).

Main barriers to family involvement include negative staff attitudes and poor relationships between staff, families and residents (Port 2004, Gaugler and Ewen 2005, Bauer 2006, 2007, Bern-Klug and Forbes-Thompson 2008, Bramble et al 2009, Bauer and Nay 2011). Therefore, staff need to put aside any reservations about involving families in care planning, be less authoritative and share the caring role with families (Gaugler and Ewen 2005, Davies and Nolan 2006, Bauer 2007).

Most research exploring family involvement in residential care has been carried out in Australia and the US, with little insight from an Irish perspective. Similar to other countries, there are now national policy guidelines in Ireland (Nursing and Midwifery Board of Ireland (NMBI) 2009, Health Information and Quality Authority (HIQA) 2009), which recommend new standards in residential care settings, including the duty of providers to preserve and encourage family involvement. Hence, research exploring family involvement in the care of a relative admitted to residential care is timely.

Aim The aim of this study was to explore relatives’ involvement in the care of older adults admitted to residential settings.

Method A qualitative approach was adopted, using semi-structured interviews that were audio-recorded. Purposive sampling was used to recruit ten participants from three long-term care wards in two residential settings in southern Ireland. Of the ten participants, one was excluded because the person’s mother was present during the interview and might have introduced bias. Of the remaining nine participants, the identified relationship to the resident was son (n=4), daughter (n=3), husband (n=1) and wife (n=1).

The manager of each study site helped with participant identification and recruitment. The researcher developed an interview guide based on findings from the literature. Data were analysed using content thematic analysis guided by

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Box 1 Overview of data analysis

Stage Actions completed

1 Notes were made on topics discussed during the interview. Also, memos on ways of categorising data were written as the research was being carried out. These notes and memos served as memory joggers and a method of recording ideas.

2 Transcripts were read through and notes made on common themes in the transcripts.

3 Transcripts were read through again and open coding was conducted (headings were written down which represented all characteristics of the content).

4 The categories were re-examined and grouped together under higher-order headings. This reduced the number of categories by collapsing comparable categories together into broader categories.

5 The list of categories and sub-headings was reviewed again. Any comparable or repetitious headings were removed to produce the final list.

6 Two colleagues then read the transcripts and generated independent category systems without seeing the researchers’ list. The researchers met with the two independent colleagues to discuss the three lists. Some adjustments were made based on this discussion.

7 Transcripts were reread and checked against the list of categories to ensure all aspects of the interviews were covered. No adjustments were made.

8 Each transcript was coded according to the list of category headings and sub-headings.

9 Multiple copies of the transcripts were made. The original transcript was kept for reference. Then, each coded area of the transcripts was cut out and gathered together.

10 The cut-out sections were then put on sheets with headings and sub-headings.

11 Selected participants were asked to check if they considered the category system appropriate.

12 Cut-out sections were filed together for reference when writing up findings. Copies of transcripts and original recordings of interviews also served as a reference while writing up the findings.

13 A range of examples of data filed under each section was selected and a commentary was written that linked examples together in each section.

14 Verbatim examples from interviews were used to demonstrate findings. A separate section, linking and comparing findings to the literature on the area under discussion was written.

(Burnard 1991)

Burnard’s (1991) 14-step method (Box 1). Rigour and trustworthiness of the study were ensured in several ways. First, all of Burnard’s (1991) stages of analysis were adhered to. Second, a research diary and a detailed audit trail were kept throughout the study. Finally, throughout the process, the researcher practised reflexivity, which enhanced awareness of personal beliefs, thus enabling them to be set aside.

Ethical considerations Ethical approval for the study was obtained from the local clinical research ethics committee before accessing the care sites. Permission to carry out the research and access to participants was granted by the director of nursing of each residential care site. All participants were asked to sign a consent form before being

interviewed. Each participant was given a code number and a pseudonym in the transcripts to maintain anonymity.

Findings Content thematic analysis revealed three main themes: family involvement, family-centred care, and communication. Each contained a number of sub-themes (Box 2).

Family involvement Participants described their involvement in their relatives’ day-to-day lives.

Change in role Many participants described how their role had changed since their relative’s admission to residential care. They were less

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involved in physical aspects of care: ‘My role is to try and be with her as much as possible… I was much more involved at home’ (Paul).

Similarly, Molly said about her mother: ‘Well, I mean I don’t look after her in a physical level or anything like that…when you come in first you are letting go to a great extent.’

Eileen described supporting her husband who had cognitive impairment: ‘Well, I come in the afternoon to see him... and sometimes he’s grand and sometimes he’s agitated but I think I have a calming role.’

Financial and household issues were also referred to: ‘I have two roles really; I look after what I call the admin side of things, you know what I mean, make sure her bills are paid’ (Tom, referring to his mother).

Similarly, Liam described an administrative role in caring for his father: ‘I suppose we’re very active in terms of his care, outside of the physical side of things... We’ve transferred all the stress from aspects of day-to-day life away from him; he doesn’t have to worry about paying insurance or his bills.’

Increased responsibility Some participants described an increased role since their relative’s admission. For example, Denis’s mother had lived independently before being admitted to residential care. Denis compared his role before with now: ‘I suppose I am kind of a semi-carer. I come up and make sure she is okay and she has everything she needs. I take her out for acupuncture and stuff like that during the week.’

Trudy was an only child and her dad had been a widower for many years. She visited him six days a week: ‘I’m the only one, so I feel I have to visit all the time because there won’t be anybody else… I’m his advocate.’

Family-centred care Participants highlighted the importance of being part of the caring team.

Maintaining recognition Some participants had been concerned their relatives would not recognise them and thought that visiting would help maintain the connection. It seemed to give them a sense of purpose: ‘Well, it’s really to keep up the contact with him and so he won’t forget us... and you know that he’ll remember me’ (Trudy).

Eileen spoke about her husband recognising her: ‘Now he mightn’t remember my name. Not all the time now but he’ll know that I’m there.’

Ensuring that their relatives recognised them was important to participants. They visited more often to maintain this recognition.

Social connectedness After admission to residential care, social connectedness can be difficult to maintain, especially if the resident is physically or cognitively impaired.

Many participants highlighted the value of maintaining connections with the outside world. Liam’s father had a chronic disability and his family took turns taking their dad home every Sunday: ‘Keeping in touch with his home life…exposure to grandchildren, and people he knew from when he was young or extended family members.’

Furthermore, Liam’s family tried to: ‘...emulate as much of a home environment as they possibly could.’

Gerry thought his mother benefited from being taken out often: ‘We take her out… She loves the garden back home and the dog and things like that.’

Yet it was not always easy or in some cases, physically possible, to maintain connections. For example, Paul found it difficult to take his wife home for a visit: ‘I am hoping maybe in the summer time now; I’m not far away, maybe to take her out for an afternoon or something, in a taxi or one of those wheelchair cabs.’

Similarly, Maggie said: ‘I’m almost afraid to take him out because I remember the time he broke his hip. We can’t actually physically do it.’

Communication Communication emerged as a recurrent theme.

Staff-family relationships Overall, participants were positive about their relationship with staff: ‘They have a chat with me and let me know how he’s getting on, when I come in for dinner they thank me. I would have the courage to say it if I felt something wasn’t right’ (Trudy).

Similarly, Molly received updates from staff: ‘They run everything past me first, and every month they say “are you happy with her care?” I said she loved birds, when I came in the following day there was a bird feeder outside her window.’

Box 2 Themes and sub-themes identified

Family involvement ■ Change in role ■ Increased responsibility.

Family-centred care ■ Maintaining recognition. ■ Social connectedness.

Communication ■ Staff-family relationships ■ Satisfaction with care

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Staff adopted a professional approach: ‘People are very respectful around here and they are very committed. If there’s an issue, there’s no problem getting information’ (Liam).

Paul’s wife had recently moved from one residential care setting to another: ‘I find the staff here very homely, they do talk a lot about how she’s doing... I mean it’s like an extension of the family now.’

All participants appeared to have a good relationship with staff who they described as approachable, professional, kind and competent.

Satisfaction with care Overall, participants were satisfied with their relatives’ care: ‘I have no worries about him and his care… They’re so kind; they’ll put the music on… and look after him’ (Eileen).

Likewise, Gerry said: ‘It’s when you leave and go away and leave your mother there… you know she’s being cared for and looked after.’

However, four participants mentioned issues about continuity of care, the use of agency staff and resources including staffing levels: ‘I think they’re under-staffed. I think they were a bit short here a few weeks back and they asked if we could bring her back in early’ (Denis).

Likewise, Liam said: ‘…resources are more constrained; people are overworked and under resourced.’

Discussion The study aimed to explore relatives’ involvement in the care of older adults admitted to residential settings. The small sample size and qualitative nature of this study limit the generalisability of the findings. Furthermore, the sample selected may have been limited to relatives who visited most often and were most willing to participate. Nonetheless, this study has several important findings that have implications for practice.

Three themes emerged from the data: family involvement, family-centred care and communication.

In terms of family involvement, participants spoke about their role changing after their relatives’ were admitted to residential care. They reported having less involvement in the physical side of care but more involvement in other aspects, for example, calming residents, cheering them up, assisting with meals, paying bills, laundry, mental and emotional support, and advocacy. This altered role has been referred to in previous research investigating family involvement (Gaugler and Ewen 2005, Davies and Nolan 2006, Kellett 2007, Bern-Klug and Forbes- Thompson 2008, Bramble et al 2009).

In contrast, three participants thought they had an increased responsibility since admission. In the case of two of these, their relatives had lived independently before admission and due to acute illness were now dependent. Both were now involved in their relative’s care. The third participant was an only daughter, who referred to the added pressure of not having other friends or family to visit her father.

A small visiting network has been identified as a barrier to family involvement (Port 2004). Nurses should assess the level of social support a resident has and tailor the care plan accordingly (Swann 2006). For example, if the support network is limited, then nurses should encourage engagement in activities organised in the care setting and introduce the person to other residents with mutual interests. Group interventions have also been recommended in residential settings to help improve residents’ health and wellbeing (Haslam et al 2010).

The second theme was family-centred care, which is said to provide significant benefits for older adults and their families (Logue 2003, Swann 2006, Kellett 2007, Bramble et al 2009, Wilson and Davies 2009).

Two sub-themes emerged: maintaining recognition and social connectedness. Participants whose relatives had cognitive impairment reported how important it was to them that they recognised them. They thought that visiting the person regularly helped to maintain the connection.

Furthermore, many participants discussed taking their relatives out for appointments or on days out, which helped to keep them socially connected. It appears that in this research, staff were successful in adopting a family-centred approach. However, it is not easily achieved. It requires organisational and administration changes as well as a shift away from a task-orientated model of care to a family-centred one (Bauer 2006, Rockwell 2012). For example, there should be flexibility in terms of visiting times and residents should be encouraged to personalise their bedrooms with items from home. Also, Bern-Klug (2011) emphasises the importance of rituals in residential care settings, which help to maintain social connection for residents.

The third major theme was communication, with two sub-themes: staff-family relationships and satisfaction with care. Good communication is pivotal to family involvement, person-centred care and staff-family relationships.

All participants appeared happy with staff-family relationships. These are encouraging findings and in line with recommendations that staff should initiate discussions with family members and promote their involvement (Logue 2003, Bramble et al 2009,

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Bauer M (2006) Collaboration and control: nurses’ constructions of the role of family in nursing home care. Journal of Advanced Nursing. 54, 1, 45-52.

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References

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Conflict of interest None declared

HIQA 2009, NMBI 2009, Wilson and Davies 2009, Bauer et al 2013). Furthermore, these findings are contrary to previous research findings that staff were not supportive of family involvement and disregarded their contribution to care (Gaugler and Ewen 2005, Bauer 2006, Davies and Nolan 2006).

In relation to satisfaction with care, four participants identified negative issues that could lead to disruption in the care setting. These concerns included lack of continuity of care, the use of agency staff, staffing levels and lack of resources. Some of these factors may be related to the current economic climate and are difficult to tackle. However, interventions such as family councils or the inclusion of family members in care planning meetings would help to enhance communication between staff, residents and families and ensure transparency in terms of dealing with some of these issues (Curry et al 2007, Dijkstra 2007, Heathcote 2012). Furthermore, interdisciplinary education would be beneficial to enable caregivers to develop strong relationships with residents and their families (Levine et al 2010).

Implications for practice Nurses should be aware of the complexities associated with family-centred care. Nurse managers should engage in organisational and cultural change in residential settings to foster family-centred care. Furthermore, in-service education focused on

implementing family-centred care should be offered to nurses. In terms of practice, nurses should:

■ Communicate openly and honestly with relatives and residents to develop good relationships.

■ Involve relatives in the care of residents from admission, that is, asking relatives to provide information about them during the admission process.

■ Discuss role expectations with relatives as part of the admission and care-planning process. This will help to build relationships with staff and provide an opportunity for relatives to ask questions and disclose what they expect.

■ Assess the level of social support. Hence, for those with poor social support, nurses can tailor the care plan to meet these needs.

Conclusion The transition from home to residential care is a challenging time for residents and families. However, this research indicates that changes may be occurring in residential care settings. In this study, residential care staff adopted a more family-centred approach and recognised the importance of family involvement in care. Future research should investigate reasons why relatives might not be involved and look at developing nursing interventions that engage all residents and their families in care. A collaborative, integrated approach to care is essential.

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